GRAVES and CONFUSED

[NIKEGIRL]

Hi. Thanks for looking and advice. I’ve been unwell this week. Monday night had a light sore throat. Tuesday a very sore throat at work and thought I had flu. Tuesday night in ED. Temp was 37.8. I’d had 14 paracetamol tablets that day. Very sore throat and unwell. Nose was green. Heart went off for 2 hours 165-180bpm. Wednesday spent it at home. Wednesday the mouth ulcers have appeared. Two small ones. In ED I asked about my WBC and neutrophils and the dr said they were ok. I’m really not sure what is going on. I’m taking 10mg of carbimazole a day. My T4 is 25 range (10-24). ED didn’t check my T3. Should I go see my GP or is it a waste of time? I feel like I am a bother because I’m at the doctors every other week. Thank you 🤒

[Valarian]

Did they definitely test your wbc?

If you aren’t well, you should certainly talk to your GP. This could be completely unrelated to your Graves’.

[NIKEGIRL in reply to Valarian]

Dr at ED said wbc and neutrophils were ok and that my blood work came back ok. I feel like a hypochondriac. I live in New Zealand and it’s odd to get this sore throat, my heart went off at 180bpm, a green snotty nose and now mouth ulcers.

[Lora7again]

You could have a bad cold because my husband has just had one because it is the season. He still had to have a covid test to check he didn't have the virus. Perhaps you should ask your GP about that as well.

[NIKEGIRL in reply to Lora7again]

I live in New Zealand. I don’t know what’s going on with me. Sore throat, then nose, heart that went off and now mouth ulcers. I’m starting to feel like I’m a hypochondriac

[Lora7again in reply to NIKEGIRL]

You are right to be worried because it is a very powerful drug with a lot of side effects. I actually came out in a nasty rash so I swapped to PTU but that still made me feel unwell because my Endocrinologist didn't monitor me properly and I became underactive.

[pennyannie]

Hey there

You are not a bother, nor a nuisance nor a hypochondriac but you are suffering with Graves Disease and you do need to know what is going on.

Your gut diagnosis sounds logical as we read these symptoms could be related :

Did you get a copy of the hospital tests and can see your WBC count and discount possible neutrophils ?

Your T4 is now down but without a T3 it's a pretty pointless blood test.

You are not well and you need the medical assurance that everything is going in the right direction otherwise you will upset yourself further causing additional anxiety and stress.

Please talk all this through with your doctor, and try to stop second guessing - though I know this is difficult as it's the nature of Graves Disease .

[NIKEGIRL in reply to pennyannie]

Hello friend. Hospital as pretty useless. De was nice enough. No T3 test so can’t see how hyperthyroidic I still am. I reckon I am hyper because my heart went off, luckily at night so I could do an ECG trace. I have not seen the wbc count result nor my neutrophils. I’ve got a phone consult tomorrow with another GP in the practice as my GP is away. These things can’t all be coincidental. I just feel like a hypochondriac because the hospital bloods have shown nothing significant and I’m doubting myself and losing confidence. Is it even worth talking to a dr?

[pennyannie in reply to NIKEGIRL]

Hey there - so the answer is " Yes - talk to this other doctor and express your concerns :

There is an alternative AT drug to Carbimazole called Propylthiouracil ( PTU ) for short :

I read it's an older style AT medication but does the job equally well :

Generally speaking these symptoms - if AT drug related are said to appear relatively early on in treating with Carbimazole - but in all honesty - who knows :

You need peace of mind and need to ask the questions and try and allay your anxiety and concern, as these again will be acting as a " driver " for the disease.

Your vitamins and minerals, ferritin, folate, B12 and vitamin D have probably nose dived and worth getting checked out as well as a full thyroid panel.

Take good care, and update us whenever you feel you want to.

[NIKEGIRL in reply to pennyannie]

Hi. I’ll talk to the other GP in the practice., I’ve heard of the alternative PTU. Endo has mentioned it too. There is a higher chance of liver damage with PTU. No doubt someone will be along if I’ve got that wrong. B12 was through the range at 800. Ferritin was 213, top end being 200 but I have always suspected I was anaemic because my heamaglobin is borderline low and I suspect Graves is giving an inflammatory reading for ferritin. I’ve been doing vitamin d everyday for 4 months and selenium and magnesium plus 1300mg a day of vitamin c. Who knows. My next full thyroid blood test is 27 October for TSH, T4 and T3. Thank you though. I’m not feeling anxious. I feel exhausted due to being u well and I’m the type of person who wants answers

[pennyannie in reply to NIKEGIRL]

Hey there -

Just thinking on - are you still on the beta blocker - could that have influenced the unexpected heart rate ?

Yes, I think you are correct and there is a " different " risk with PTU but your liver can be monitored on a regular basis to assess any potential issues.

You will be exhausted - accept this fact and allow yourself time both physically, mentally and emotionally to re-programme yourself.

[tattybogle]

You are not a hypochondriac, i've been reading your posts for a while. you have a proper disease with proper consequences and quite scary symptoms . you are still managing to work and everything else. Carbimazole is a serious drug , and i believe can very occasionally have serious reactions, needing to be put on an alternative drug.

You are being responsible by paying proper attention to what's going on with your body, and you'd be daft if you were not taking this seriously.

Graves will be making you feel more anxious about everything , and you've done really well so far to keep your fear under control and the rest of your life running.

Leave worrying about hypochondria to people who've caused their own medical problems and are not following good advice about how to improve their health .

YOU are supposed to be going to the doctors /hospital until your hormones are stable again and you are feeling well . That's what they are there for. People in your situation. If you need to go .... go.

Reassurance is a very necessary and valuable part of medical treatment too, the reassured patient does much better than the panicked one, and is in a better position to help themselves , so gets better quicker , and ultimately saves the hospital time and money.

You are doing the right thing.

If there's not a problem , then reassurance is good.

If there is a problem, you have helped them pick it up quicker.

No one will thank you for ignoring your concerns and toughing it out, if it turns out something needs attending to.

I once ignored a breast lump for 6 months because i was sure it was nothing...... and it turned out it was just a cyst....... but the nursed gave me a massive telling off for ignoring it.

[NIKEGIRL in reply to tattybogle]

Thank you for your kind post. How hard it must have been to have had a breast lump. I just don’t know what is going on. The blood tests are saying everything is ok but physically I am sick. Started with the sore throat, runny nose that went green and then my heart just went off. I had diarrhoea first 6 days before this. Something is not ok but when the doctors tell u everything is ok then it rocks my confidence in myself and I have trouble trusting doctors anyway. I just don’t want to make myself out to b that woman who calls the dr every week. I hate the carbimazole. It makes you feel sick and generally unwell. Because my bloods have come down so well no one is wanting a change of drug. Except me. I feel unwell most days on the carbimazole and now I am sick with symptoms of carbimazole but bloods are ok so no one actually cares about me as the person and how I am feeling or coping. This is really hard.

[tattybogle]

Actually i was too busy at the time to be worried about it at all, but for some reason i was certain it was not the big C. I had a 13 yr old in school and two parents 140 miles away living in separate houses, both deciding to get really old and infirm at the same time as each other... i didn't think this through when i decide to move so far away.... oops.

But it was a big lesson in not ignoring your own health because your life is too busy, and you feel like you can't stop the bus and get off.

I would have looked really silly if it had been cancer. Fortunately my intuition was good.

Speaking of intuition, you know you are an active person not a hypochondriac layabout ,Trust yourself, do not let this worldwide culture of poor understanding and treatment of so called 'normal' thyroid blood results make you doubt how you feel......if you hang around here long enough you soon see without any doubt that 'normal' means Jack S***, and the attitude of doctors to 'normal' only goes to prove how thin their understanding of the subject is. They are the ones should be hanging their heads in shame, because the lack of proper support for thyroid conditions leaves us having to keep pestering them. If thyroid problems were given the attention they need, then this forum would be full of people sharing recipes, and you would not have to get reassurance from the other side of the planet. ( by the way , i like the sound of NZ, wish i lived there not UK)

But they are not , so this place is buzzing with people doing the doc's job for them.

You're right . this IS really hard, and you're on a really tough road right now, but i hope it will get easier . I never had Graves , just hypo , but it sounds much harder to cope with than what i have, and i know how hard it is to 'just be hypo'.

If you let the idea that 'there's nothing much wrong with you now, your results are normal' get into your head, because that's how doctors make you feel .... you will do yourself harm in the long run...trust yourself..... you're not daft . And you're not doing this for attention , you'd much rather be living your life like you were before your thyroid came out to play.

Doctors would do much less harm to people if they were honest and said . "i don't understand why you feel unwell with these results" , but instead they make out like its you that doesn't know your arse from your elbow .

You probably deserve a medal for still managing to go to work, and i'd like to see how some of these doctors and consultants would manage in a hot swimming pool if they felt like you do.

Keep going , we know it's crap , but it will get better.

[NIKEGIRL in reply to tattybogle]

Yes it will get better. I’m thinking instead of a phone consult I will drive to the doctors which is 20 miles away. You’re an inspiration. I lived in the UK for 10 years. My husband is English and we had our children there and then moved to New Zealand when the Iraq war broke out. I’m from New Zealand. We live it here. I live in the country which I love. I don’t have to see people. I would rather be in the gym lifting weights rather than in my bed sick. See what the dr says. Thank you ☺️

[ling in reply to NIKEGIRL]

How are u feeling now?

[NIKEGIRL in reply to ling]

Blood is looking better T4 is 25 range (10-24). T3 we don’t know yet. Another week before the blood test of TSH, T4 and T3.

[ling in reply to NIKEGIRL]

Yes I saw your earlier replies.

Is the sore throat and fever better?

If possible, u should get a copy of your blood test results and check it yourself. It's possible to have delayed onset agranulocytosis caused by carbimazole.

ncbi.nlm.nih.gov/pmc/articl...

Do u have a cough?

Lastly, do have your FT3 tested given your heart symptoms. These are serious symptoms for Graves, and have potentially serious life time consequences.

God bless.

[NIKEGIRL in reply to ling]

Thank you. I’ve just been to the GP. I live in New Zealand so not really Covid territory as it’s not in our community. I had a fever at the appt. I have been given a Covid test. Best to be safe than sorry. If I have Covid it will be national news so probably not. Dr gave me a prescription of antibiotics. No work for 5 more days. I suspect my T3 is 11 or 12. Range 2.0 to 6.0. I won’t know until the 27th of October. The reason I say that is my heart has gone off. Feel better having gone to dr. See how I go over the weekend. Thank you for your kindness. NIKEGIRL

[ling in reply to NIKEGIRL]

Good that u had the Covid test done. Yes, noted u are in NZ : )

Do update us again if the symptoms don't go away.

Try and get plenty of rest and liquids.

All the best.

[NIKEGIRL in reply to ling]

Thanks. See how the next 5 days go and the blood test on the 27th to see where the T3 is sitting. Thank you

[NIKEGIRL in reply to tattybogle]

I think I would rather have Graves than be hypo although I’m sure we would both rather be free of these thyroid issues than have either of them. I’m glad that you didn’t have cancer but sorry your parents were getting older and living a good distance away. If you are anything like me though you live for your children and they bring you such pride. I hope your life has settled down in a positive manner. People lives are complex and complicated. Thank you for your humanity. It means a lot to me. I hope you are well. 😘

[NIKEGIRL]

Hi. My blood T4 is pretty good. It’s at 25 and the range is (10-24). I don’t know what T3 is.